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Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

Interested in more discussions like this? Go to the Neuropathy Support Group.

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bunky44 | @bunky44 | Apr 11, 2023
In reply to @julbpat "I just looked this up - Benfotiamine is B1, or thiamine, as has shown some promise..." + (show)
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I just looked this up - Benfotiamine is B1, or thiamine, as has shown some promise with diabetic neuropathy.

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Morning Julbpat~
Well..thought I would post this new news..since I got so much interest.
First let me say that I admire your due diligence in all matters!
I slept on my back for the whole night..and I can report that I had a really good night's sleep...NO numbness or leg pains at all....so I'm a happy camper today!
I'll continue to take the Benfotiamine 150mg. in the am with a meal...and do the exercises as well....And..I guess I'll just have to get used to sleeping on my back from now on. Being relieved of even one health issue is so important to see that we all can make changes that bring us more comfort. Can't rely on doctors for all the answers.
I sincerely hope that this is informative and wish you all well...

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cgs | @cgs | Apr 11, 2023

Hi there I just pray in the name of Jesus that he will work in your life the closer you get to him the more that he will help you the more that he will give you strength to endure and hope I pray that he would touch you and comfort you and help you and put people around you to be encouragers and help Supply your needs I pray that you would be able to go to a good Therapy Clinic maybe even the Loma Linda and neuropathy Clinic the reason I keep mentioning them is because I haven't heard of very many other clinics that are foreign neuropathy that claim to be having some success at rejuvenating nerves that most doctors will say are dead and the only thing you can do is take painkillers

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adejuliannie | @adejuliannie | Apr 11, 2023
In reply to @jonelson4 "A spoonful of yellow mustard works great, too" + (show)
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A spoonful of yellow mustard works great, too

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I have used Apple Cider Vinager 2 Tablespoons to 8oz Water

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jonelson4 | @jonelson4 | Apr 12, 2023

The ingredients in my yellow mustard are: white vinegar, mustard seed, water, salt, turmeric so maybe that is why it helps relieve the leg or foot muscle cramp I sometimes wake up with in the middle of the night

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bcool123 | @bcool123 | Apr 13, 2023
In reply to @bunky44 "Hello again.....thought I should update what I was thinking was too good to be true. I..." + (show)
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Hello again.....thought I should update what I was thinking was too good to be true. I did have a fabulous day yesterday!!!....my feet, palm of my foot and my shins all felt totally normal!...BUT...when I went to bed...I made the mistake of side-sleeping..which is (was) my most comfortable way....BUT...not for PN, apparently! I woke up after two hours with my feet feeling hot and I could 'feel' my shins as well! I tried sleeping on my back with a pillow under my knees for the rest of the night..but couldn't go back to sleep at all! I got out of bed early....legs felt heavy..toes numbed up again....but I did the stretches for PN...took the Benfotiamine 150mg. with breakfast and I'm back to 'me'..without the numbness. You might also try Youtube...for exercises...Bob and Bill(?) chiros..they are a little strange, but wonderful chiros...this one I got from them..
Holding on to something....standing..bring your toes up..lean back...and then go forward and raise up the back of your foot..as far as you can on your toes.....do a lot of these...and walk around as much as you can. Now..it's afternoon and my legs and feet feel fine...I have no feeling of 'feeling them'. I would strongly suggest to you to google Benfotiamine and see what you think. Now that I've been looking more into PN...there are a lot of wacky treatments out there...so beware.
I have a bulging
L-5...and the MRI shows the swelling and a stenosis of the nerve channel...so that's what's causing my PN....and side-sleeping is a major problem for this...I didn't know this. Hopefully, I will not have the same problems tonight..as I'm sleeping on my back with a pillow under my knees...wish me luck!

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Could you share brand, strength and of Benfotiamine you take? Would appreciate your response. PN in Colorado,
Bcool123

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paktoledo | @paktoledo | Apr 14, 2023

Yes, I am dealing with non diabetic PN. Newly diagnosed. What can I expect from here?
Thank you in advance. Pat

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John, Volunteer Mentor | @johnbishop | Apr 14, 2023
In reply to @paktoledo "Yes, I am dealing with non diabetic PN. Newly diagnosed. What can I expect from here?..." + (show)
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Yes, I am dealing with non diabetic PN. Newly diagnosed. What can I expect from here?
Thank you in advance. Pat

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Hi @paktoledo, That's a good question that I wished someone could answer but I'm not sure anyone can answer it. Though, there are somethings within your control that may help your condition. You might just look through the following information from the Foundation for Peripheral Neuropathy to see if there is something that sounds like it might help.

-- Living Well: https://www.foundationforpn.org/living-well/

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paktoledo | @paktoledo | Apr 14, 2023
In reply to @johnbishop "Hi @paktoledo, That's a good question that I wished someone could answer but I'm not sure..." + (show)
Profile picture for John, Volunteer Mentor @johnbishop

Hi @paktoledo, That's a good question that I wished someone could answer but I'm not sure anyone can answer it. Though, there are somethings within your control that may help your condition. You might just look through the following information from the Foundation for Peripheral Neuropathy to see if there is something that sounds like it might help.

-- Living Well: https://www.foundationforpn.org/living-well/

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Thank you so much! I will definitely be using this as a resource!
Have an awesome day, Pat

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delia74 | @delia74 | May 15, 2023
In reply to @johnbishop "Hello @anya40, Welcome to Connect. I have small fiber peripheral neuropathy, degenerative arthritis, PMR (in remission..." + (show)
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Hello @anya40, Welcome to Connect. I have small fiber peripheral neuropathy, degenerative arthritis, PMR (in remission now) and a few other conditions. I can understand why you might feel you may have been misdiagnosed. It's good that you are adovating for your health and learning as much as you can about the conditions. If it were me, I think I would want to discuss my thoughts with my primary care doctor and make sure they know the treatment they started you on is not helping. I also was started on gabapentin and stopped taking it but I talked with my doctor immediately after I stopped and we had a conference with her team of doctors about the treatment with gabapentin. When I told them I don't have the pain with my neuropathy and that I only have numbness, they told me gabapentin will do nothing to help with the numbness and agreed that I shouldn't be taking it. I shared my story in the Member Neuropathy Journey Stories: What's Yours? discussion here: https://connect.mayoclinic.org/comment/310341/

Here are a couple of websites that I've found helpful on learning more about neuropathy:
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/newly-diagnosed/
-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview

You might find the following site helpful if you want to plan the conversation with your doctor - https://www.patientrevolution.org/tools

Is discussing your thoughts about a possible misdiagnosis with your doctor something you might consider doing?

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The site patient revolution.org/visit-tools HAS BEEN TAKEN DOWN.
You might as well delete from your post, totally useless.

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John, Volunteer Mentor | @johnbishop | May 15, 2023
In reply to @delia74 "The site patient revolution.org/visit-tools HAS BEEN TAKEN DOWN. You might as well delete from your post,..." + (show)
Profile picture for delia74 @delia74

The site patient revolution.org/visit-tools HAS BEEN TAKEN DOWN.
You might as well delete from your post, totally useless.

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Welcome @delia74, The bad news is that the site was having some normal growth spurts and going through some redesign. The good news is that it has not been taken down but the link to the patient tools did change. Thanks for letting me know.

Here's the new link - Tools for the Healthcare Visit: https://www.patientrevolution.org/tools

Are you struggling with peripheral neuropathy?

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